JJ’s Stage 4 Colorectal Cancer Story

This article has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Pre-Diagnosis

Introduction to JJ

I’m JJ Singleton. I’m from a small town in western North Carolina. I usually just say I’m from near Asheville because everybody’s heard of Asheville. Nobody’s heard of Canton, North Carolina, which is a town of about 3,000 people. [I] grew up in a community of about 1,000 people, so [a] very small town, country oriented. 

I was a huge sports person. [I] grew up playing basketball, football, ran track, [and] played college football for 2 years before too many concussions made me quit.

I did the competition on August 1st. After that, my body crashed. I couldn’t eat, I couldn’t drink without becoming violently sick to my stomach, and I was losing about 5 pounds a week at that time because I just wasn’t able to eat. I was dehydrated every day. 

I would lay in bed and look at my symptoms, and the bottom was always colon cancer or cancer. I was just like, “That can’t can’t be me.” 

Then my mom made me go to the doctor, and by that point, I could put my shirt up against my stomach and you could see the tumor throb through the skin. As soon as the doctor looked at that, he was like, “You got to go get a scan right now.” That’s kind of where it all started.

The Diagnosis

How much time passed between your symptoms starting and going to the doctor?

It was from Memorial Day, so May to September 4th, because September 4th is when I went to the doctor and went through the scan. 

They said there was a mass, and then as soon as he said that back in the doctor’s office, all the dots connected from the last few months of what I was dealing with. Before I even had to go get a colonoscopy a few days later, because it was Labor Day weekend, I knew it was cancer.

[I was] going through that and just feeling like, “How could I have cancer at 27 years old?” Then that Tuesday happened. It was [the] colonoscopy, meet with the surgeon the next day, and within a few days I was in the hospital for surgery.

My colon was about 95% blocked.

They said I was the youngest person that they had seen in a long time, just because we’re such a small area. They were like, “We don’t know why you’re so young with this massive tumor.” Then they’re like, “You should have come in months ago, as soon as you felt the pain.” 

I was like, “Well, now I know that, but back then I wasn’t thinking I ever needed a doctor.” 

Then they were like, “This has probably been growing in your colon for years to get to this big.” 

I was just in disbelief. I was just finally getting my life healthy.

Did you feel pain or anything before Memorial Day?

No, because the way it grew and the position it was, as soon as it got to that certain size is when I felt it. It was in there and growing. It kind of grew horizontally through the colon. Then it just started growing. 

It was slow growing until a certain point, and then it just started growing exponentially. As soon as it got big enough to where it started obstructing and pushing through the colon into the small intestines is when I started feeling the pain.

That was the first sign that my body did not like surgeries and hospitals, because I’ve been in there way too much. After that, they were like, “You are so young. We want you to go to Duke just to see why you have this cancer.” There was no real family history of it. 

I went to Duke. They got me genetically tested. I have Lynch syndrome, which is the reason I got cancer so young. The reason we didn’t know anything about it is because we had such a sketchy family history in parts. 

My dad’s side of the family didn’t go to the doctors at all. My grandma had some brothers that died early. Then on my mom’s side, my grandma didn’t really know much of her family history just because back then they moved, and there were no records of it. Somewhere down the line it came through, and it just decided to pop up with [me].

Before 15 [or] 20 years ago, if anybody in the family died, they weren’t getting [any] autopsy or anything done. They were just putting them in the coffin, burying them, and that was it. 

I had no idea. Genetics has come so far.

At that time, I had no idea there were so many organizations and support [options] out there. Like I said, I had the blinders on. I wasn’t going to ask for help. I was just like, “I’m doing this.” My ignorance led me not to search for message boards and organizations at that time. [I] tried to shoulder it all myself.

Starting chemotherapy

After I got out — I got out around the beginning of October — they were like, “Take 6 weeks to heal.” That’s when I went to do the genetic testing. Then my oncologist in Asheville was really good friends with my one in Duke, so they kind of worked together as a team. 

[They] allowed me to do all my treatments 30 minutes away in Asheville instead of 5 hours away in Durham. They came up with a plan. They thought they had all the cancer out from the surgery. 

Let’s just go through the 12 rounds of FOLFOX, which is the normal first line of defense of colon cancer. We started that in November of 2015. I was not ready for chemo. You go through the whole education of like, “Okay, this is what chemo can do to you. This is what it’s going to feel like.” 

It’s all made by people who’ve never had it. I was like, “Okay, it’s going to feel like a bad hangover. I went through 5, almost 6 years of college. I know what that feels like.” [I] was totally wrong. [I] went in there that first time, and it knocked me for a loop. I was not expecting that kind of feeling.

I couldn’t eat anything other than soft foods. I’d been so used to that with eating after my surgery. I was so sick of it, and it was harder to get the proteins and the nutrients you needed to help your body recover. It just started a long journey of really not enjoying eating.

»MORE: Cancer patients share their treatment side effects

What helped with side effects?

They gave me some medicine to help with the neuropathy, and it kinda seemed to help a little bit. I still have neuropathy to this day. The nausea medicine [helped]. I started taking the pre-nausea meds the night before and kept [taking] it every 6 and 8 hours through 3 days, even if I wasn’t sick at the beginning, just to stay ahead of it. 

Then I started doing the edibles to help with the nausea. That was one of the few things that allowed me to be hungry and help with the nausea, because I was losing weight at first. Those were really the things that kind of helped.

Relapse and Clinical Trial

Relapse

[Chemo] was 6 months, 12 rounds of that. I finished around mid-April of 2016, and my scan was good right after that. I had a colonoscopy a couple of weeks later. It was clean, so I took a little vacation. [I] started back to work at the beginning of May.

About 2 weeks later — so it was about 6 weeks from the last chemo — I woke up [and] felt the throbbing in my abdomen again. This time I was at the doctor’s at like 6:30, waiting on [my surgeon] to pull in because I was like, “I’m not waiting again.” 

That kind of started the next couple of weeks of every kind of scan, biopsy, [and] a trip to Duke. We learned that the cancer came back, but it wasn’t my colon this time. It spread to my abdominal wall and lymph nodes throughout my body.

It was causing me severe back pain. My life at that point was pretty much laying on a heating pad, taking pain medicines, taking hot showers, and trying to get a couple hours of where I wasn’t in extreme pain. 

I was numb to the world. [I] couldn’t talk to people, couldn’t text even. I was getting messages. My mom was there [for the diagnosis]. I was like, “You tell people. Let them put it out there.” I couldn’t even pick up my phone to answer.

»MORE: Breaking the news of a diagnosis to loved ones

Getting through feeling numb

It took me a long time. Actually, it took me many years because after I got that, I was like, “Okay, I’m just going to go to treatment.” Through the next about 6 months until around November of 2016, it was just solid bad news. 

I would do a couple of rounds of that chemo, [get a] scan, [and it] wasn’t working. It was growing. I was in more pain. Same thing. By October, I literally wasn’t leaving my house except to go to doctor appointments. I was all day on the heating pad because my back was in so much pain. 

[I was] going through about a bottle of 100 pain pills in a week, and that wasn’t even taking the edge off. It allowed me maybe a couple of hours of sleep at night. I was hopeless, and then it got really bad. The cancer grew into my stomach where it empties into my intestines and closed it completely off. 

I went to the hospital because everything I was eating was sitting in my stomach until I threw it up. I spent almost a month in the hospital. Everything kind of happened really quick around then. 

Right before that happened, I made the decision to apply for a clinical trial because all the FDA-approved chemos didn’t work, and it was either hospice and dying or try this clinical trial. That was my only 2 options. 

They were like, “This is your last chance. If this doesn’t work, you’re too far gone. You will either be dead by the time we realize it didn’t work, or you’re going to die.” I was like, “Okay, we’ll go for it.” 

[I] realized how crazy clinical trials could be. The only thing I ever heard about was on TV and thinking I’m a lab experiment, which [is] totally wrong. [I] realized I have complete control of it, but realizing that I’m doing a drug that they don’t know the side effects for. I’m in there, filling out hundreds of pages of possible side effects, and I give my consent to all of them. [It] was a waking up moment.

The clinical trial

It was a phase 2 trial. They knew it worked. It was a drug. It was pembrolizumab, or Keytruda, which was the drug, and it worked in other cancers. The type of cancer that worked is where it’s mutated in the microsatellite, to get really technical. 

I was accepted into it, but it was a stage 2 trial, so I had to go and fill out everything. Before I could get my first infusion of it is when I got rushed to the hospital, where I couldn’t eat anything. The pain was so extreme, and I was losing weight again. I lost about 60 pounds in 2 months from everything. 

They put me in the hospital, and they’re like, “All right, we got to push back your treatment because we got to figure out some way.” They tried a feeding tube, and it just kind of balled up in my intestines, so they had to take all that out. 

It ended up they had to put drainage tubes into my stomach and my intestines to drain the bile and just the digestive fluids. I got fed through stuff called TPN and ended up being on that for 450 days. I went 450 days where I did not eat solid food. I didn’t eat anything. I got 15-hour infusions of that every single month.

Did the clinical trial make you feel better?

Over the course of the next year, it was weird because the year I was on TPN, I had a pain pump, too, because the pain got so extreme. I couldn’t do anything. Over that 14 months, it shrank it enough to where it’s not the constant horrible pain. 

I still feel pain in my back, in my abdomen, every single day, but it’s something I can live with. [I can] still get up and go on a walk or go sit and watch a movie and be okay with it. When I think about it, it’s still there, and some days are worse than others.

I was just so deep in my own head and knocking my self-worth down and not believing anything good could come from it until about 2020, when I started having people and started kind of opening up. 

Then Joe Bullock, who’s the lead administrator of Man Up to Cancer with Trevor [Maxwell], asked me to join the group. I’d joined groups earlier, and I would leave within a week because it was just so much about this drug and this treatment and this. I was like, “I hear that all the time anyways. I don’t want to be in a group with it.” 

That group changed my life. I started [and] became comfortable talking to people. Through that group and Joe and Trevor, they got me to apply to an ambassadorship with Fight CRC, which I got. I was an ambassador there, and now I’m part of another organization called the Colon Club and Colon Cancer Coalition. 

It’s kind of snowballed really quickly over the last 2 years to where I’ve got to do amazing things, [like] go on travel that I’ve always wanted to do. It’s crazy how just saying yes to one thing and joining one group kind of snowballed into changing my whole life.

Man Up to Cancer

Man Up to Cancer is just a group. There’s a website, a podcast, and then a private Facebook group where you have to be a man and you’ve got to be dealing with cancer or be a caregiver to somebody with cancer. It’s just a place you can go there and be yourself. 

There’s so much stigma and everything to a man, like we’re supposed to shoulder everything. We’re not supposed to show emotions. Especially from the culture that I grew up in, that Southern Appalachian person, you’ve got to be tough. You’ve got to be the leader. Everybody, rely on yourself. 

Going to therapy

I started that before I joined any group. I realized that the thoughts I was having in my head about not wanting to live terrified me enough to where I needed help, just because I didn’t want to put that burden on other people of walking through the door and seeing something that I did. 

It just scared me enough to realize that I needed it, and be damned what anybody else that still has that stigma said about it. People tell me I’m strong, tough all the time, but the toughest thing or the bravest thing I ever did was admit to myself I needed help and I couldn’t do it alone.

I still deal with it every day, but it’s made me realize that mental health is not a start and end point. It is a very fluid kind of process. I can go through days or a week where I’m feeling horrible, and then you go through [it and] you talk. The next day, you might feel a little better. That’s okay. You don’t have to make improvements every single day.

Reflections

How are you doing now?

Actually, I just had my 3-month scans last week. [I] got the results 2 days before Christmas. Everything’s stable. The main tumor’s stable. I have spots that pop up. I have a couple of nodules in my lungs and some stuff that are too small to do anything about right now, so we just add those to the watch list. 

The next sentence has it exactly how I write it on my Instagram, and it made me proud. [It] took my breath away. I can look up on their official Wikipedia stuff on the internet, and it has it there. It was amazing and just something that I tell everybody about.

Chemo routine

I got, “Never tell me the odds,” tattooed on my arm just a few weeks ago. People notice I do those pre-chemo thoughts. That is the last thing or first thing on my mind right before I open the door to go into chemo every morning. 

Listening to your body

Anything that feels off, anything that feels similar to what you’ve felt before, I’d say go directly back to the doctor. I’ve known a lot of people who’ve had horrible experiences with doctors not believing them. 

Demand a second opinion. Go to a second, third, fourth doctor. You know your body, and 99% of doctors have never been through cancer. They could do the medical side. You could read about it in textbooks, but they don’t know the feelings that we know. If you feel anything or if you see one symptom, it’s always better to be safe than sorry.

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